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I thought you might like to know about this chance to make a difference...in your life and mine!!! Not enough is known by the medical community about the disorder we share...this will only change with research. This begins by collecting the medical records and imaging studies of patients like us. Please become a part of this important effort!
Ralpha
Why Does Chronic Intracranial Hypertension (IH) Happen?
Why does it only affect some people and not others? Is IH genetic? What's the relationship between weight and intracranial hypertension? Are there medications I should avoid? Am I at a higher risk for other diseases or disorders? Will I lose my eyesight? Are there better treatments for intracranial hypertension? Why doesn't my doctor understand what's happening to me? When will I get better? Can they find a cure?
If you've ever asked yourself these questions, then you know how difficult it is to struggle with intracranial hypertension. The answers can be found, with your help. The key is medical research, which is why the IH Registry was established. It is the first and only medical registry of its kind in the world today.
Why Your Participation Matters
A medical registry is a collection of medical data for a specific disease or disorder. Researchers use the information to study patients, learn about the disease/disorder and develop better treatment options. It is a vital tool in the search for a cure.
Each person is important in the IH Registry because every medical history is unique and adds to our knowledge of intracranial hypertension.
Who Is Eligible
Any person with chronic intracranial hypertension documented by a physician is eligible to join the IH Registry. This includes people with idiopathic intracranial hypertension of unknown origin (also known as pseudotumor cerebri or benign intracranial hypertension), as well as those with secondary intracranial hypertension due to an underlying medical condition or trigger. IH patients of any age, body type, gender or nationality are eligible to enroll.
There is no cost to enroll in the IH Registry. The IH Registry is a joint project of the Intracranial Hypertension Research Foundation and Oregon Health & Science University and fully complies with federal HIPAA privacy regulations.
Benefits to Enrolling
*Participate in the search for better treatments and a cure, including clinical trials
*Demonstrate that IH affects a significant number of individuals
*Expand knowledge about IH
To Enroll
To learn more about the IH Registry and receive an enrollment packet, you can contact the Registry directly through our website <http://www.ihrfoundation.org/intracranial/hypertension/info/C36>. You may also call the IH Registry office at 503.418.2141. Thank you for your interest and participation!
Why does it only affect some people and not others? Is IH genetic? What's the relationship between weight and intracranial hypertension? Are there medications I should avoid? Am I at a higher risk for other diseases or disorders? Will I lose my eyesight? Are there better treatments for intracranial hypertension? Why doesn't my doctor understand what's happening to me? When will I get better? Can they find a cure?
If you've ever asked yourself these questions, then you know how difficult it is to struggle with intracranial hypertension. The answers can be found, with your help. The key is medical research, which is why the IH Registry was established. It is the first and only medical registry of its kind in the world today.
Why Your Participation Matters
A medical registry is a collection of medical data for a specific disease or disorder. Researchers use the information to study patients, learn about the disease/disorder and develop better treatment options. It is a vital tool in the search for a cure.
Each person is important in the IH Registry because every medical history is unique and adds to our knowledge of intracranial hypertension.
Who Is Eligible
Any person with chronic intracranial hypertension documented by a physician is eligible to join the IH Registry. This includes people with idiopathic intracranial hypertension of unknown origin (also known as pseudotumor cerebri or benign intracranial hypertension), as well as those with secondary intracranial hypertension due to an underlying medical condition or trigger. IH patients of any age, body type, gender or nationality are eligible to enroll.
There is no cost to enroll in the IH Registry. The IH Registry is a joint project of the Intracranial Hypertension Research Foundation and Oregon Health & Science University and fully complies with federal HIPAA privacy regulations.
Benefits to Enrolling
*Participate in the search for better treatments and a cure, including clinical trials
*Demonstrate that IH affects a significant number of individuals
*Expand knowledge about IH
To Enroll
To learn more about the IH Registry and receive an enrollment packet, you can contact the Registry directly through our website <http://www.ihrfoundation.org/intracranial/hypertension/info/C36>. You may also call the IH Registry office at 503.418.2141. Thank you for your interest and participation!
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